Asiah Sunshine’s Journey with HSP49

Medical Fund for Asiah Sunshine with HSP49. friends, family, and compassionate supporters, We are reaching out to you today with a heartfelt plea for your support and generosity. Our two-year-old girl, Asiah (uh-sigh-uh), has an incredibly rare and severe genetic condition called Hereditary Spastic Paraplegia Type 49 (HSP49). This diagnosis has turned our world upside down and left us grappling with the immense challenges that lie ahead. HSP49 is a neuromuscular and neurodegenerative disorder that affects the central nervous system. It is characterized by progressive muscle weakness and stiffness in the lower limbs, leading to difficulties with walking and mobility. It can also impact involuntary functions, such as heart rate, blood pressure, temperature regulation, and breathing.  Asiah began showing symptoms at birth; however, due to the complexity and rarity of this specific genetic disorder, the diagnosis was not made until the spring of 2022. Learn more about HSP49 here  In addition to HSP49, Asiah suffers from dysphasia, a condition that profoundly affects her ability to swallow liquids safely and efficiently. Dysphagia poses significant risks to Asiah's health and well-being, making each mealtime challenging for her and our family. The necessary interventions and support to manage dysphagia are essential for ensuring her nutrition, hydration, and overall health. As Asiah's parents, we are commited to providing her with the highest quality of care and support. However, the specialized medical assistance required to manage her symptoms remains out of reach within our local area. Thus, we find ourselves on a never-ending journey traveling great distances to access the specialized care she urgently needs. Furthermore, we must secure vital equipment that insurance providers do not cover, adding to the financial burden we face. Your contributions will help with the specialized care and support that Asiah needs on a daily basis. Here is how your donations will create an impact: Medical Assistance: Your invaluable contributions will directly alleviate the overwhelming costs of essential medical treatments, therapies, and life-changing medications. These interventions play a pivotal role in easing Asiah's symptoms and addressing the progression of her conditions. Travel Expenses: Asiah's care often leads us far from home, requiring extensive travel to access the specialized care she needs. Your support will help us alleviate the financial barriers associated with transportation, accommodation, and meals during these critical journeys. Specialized Equipment: Asiah urgently requires an array of assistive devices and essential tools that fall outside the boundaries of insurance coverage, making your contributions an essential lifeline. Furthermore, we need access to power at our home 24/7 to ensure her health and safety, so these funds will be utilized to buy a generator for our home. It is essential to understand that Hereditary Spastic Paraplegia Type 49 and dysphagia are relentless adversaries, defying medical cures. Asiah's journey will entail ongoing medical treatments, constant care, and meticulous adjustment of therapies to provide her with the best possible quality of life. If you have any further questions or would like to explore alternative means of support, please see our Amazon wishlist with essential items needed, linked here  do not hesitate to contact us directly. On behalf of Asiah and our entire family, we extend our deepest gratitude for your compassion, love, and support during this journey.  Thank you, Jesse & Lexi Lichtenstein href="https://medlineplus.gov/genetics/condition/spastic-paraplegia-type-49/Dear" title="">https://medlineplus.gov/genetics/condition/spastic-paraplegia-type-49/Dear